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The Lost Caregiver: overwhelmed and seemingly forgotten

As a geriatric social worker, I meet spouses, adult children, nieces, nephews, grandchildren, siblings, and friends who push their own needs aside and redefine their lives as a caregiver.

They no longer go to the movies, watch television, or go out to dinner with friends. Instead, they wash another load of laundry, puree foods, or give another adult a bath. These loving human beings call me for assistance, guidance and support as they try to navigate the public and private systems to obtain any and all services that will help their aging loved one. They are not even calling for themselves. No, they are calling for services for their loved one.

At an increasingly alarming rate, I am watching as our public system inherently betrays the caregiver in its attempts to meet the needs of the, for all intents and purpose, the “patient.” Let me be clear. I ABSOLUTELY believe that seniors who suffer from cognitive illnesses deserve to have their needs met. I ABSOLUTELY believe that those who are not able to protect their own rights and to advocate for themselves deserve and need representation and a voice.

I write this article as a tribute to the unsung heroes, the caregivers, who systematically have their needs placed at the back of the line. What do I mean by this?

I worked with a spouse who is the primary caregiver for her husband who suffers from a severe case of Korsakoff’s Dementia. The hallmark of this type of dementia is a history of alcoholism. In this case, this is not a remote event; this patient continues to drink excessively every day, driving under the influence, and spending large amounts of money on alcohol. Even though his cognition is severely impaired, he is physically able to ambulate, drive, and perform his activities of daily living autonomously. Because of this, the spouse was told that he had to “consent” to relocation to a permanent facility or to a respite facility. But there is a problem, he will not consent and due to the severe losses in his executive thinking, he would not even understand or appreciate what “consent” is.

Subsequently, even though he cannot remember how many children he has, where his money is located, how to organize a shopping list, how to administer (or even remember) to take his medication, and even though he cannot make a doctor’s appointment, cook a meal, and literally cannot form a complete sentence, his wife cannot access help. Again, in theory, I do not believe that someone with cognitive functioning has to be relocated, or should forcefully be relocated. In fact, I have spent the last 10 years of my career advocating for the legal protection of seniors with cognitive disorders to ensure that their rights are protected even if they are deemed inapt.

Our system only looks at the rights of the patient and seems to ignore the rights of the caregiver.

My point is this: our “system” only looks at the rights of the patient and seems to ignore the rights of the caregiver. In the situation I just described, the spouse is literally falling apart. She cannot sleep, cannot eat, endures frequent bouts of verbal and physical aggression (he throws things at her) if she tries to assist her husband and redirect him. As a result, she told me she would rather, “walk into the river,” than continue living in this stressful situation. She is a senior herself and is at risk of having severe physical and mental health problems if this situation is not rectified.

She has asked for help from everyone: the police, the physician, the local community agency, the local doctor’s clinic, and myself, a private social worker. Still, no one will take responsibility and “place” him. The police say he has to be caught drinking and driving, and let us hope that it is not AFTER he has been in an accident and hurt himself or someone else. The physician says he needs to be relocated into a full care facility, but has not facilitated it and will not even commit to a letter saying he should be hospitalized at least for an evaluation period. The community agency says he must consent to move, even though he is deemed inapt, and the clinic says to drop him off at the hospital, a place where he could just walk out.

What is this caregiver to do? She literally has to put her husband in her car and drive him to the hospital and say, “I cannot care for my husband anymore.” Then she must hope that he is admitted and that he is “forced” to stay. Or, she can hire an attorney to petition the court for a forced placement, something for which she does not have the money to do. This is a huge responsibility for a loving wife who is already under tremendous stress.

As a private social worker, I have made my pleas with all involved professionals, but my hands are tied as well. I feel deflated that I am not able to do more than to empathize with this spouse and validate her fear, frustration and concerns. I tell her that her needs are important and that her well-being is just as valuable as her husband’s. Unfortunately, our system does not innately demonstrate its support of the caregiver.

I write this article as a tribute to my client’s wife, this family caregiver who has done all she can under the circumstances. My heart goes out to you, and all of your fellow family caregivers whose needs are not the priority in the “system.”

About the author

Stephanie Erickson

Stephanie Erickson is a clinical social worker with over 20 years of experience as a geriatric social worker. Her primary area of practice focuses on…

Stephanie Erickson is a clinical social worker with over 20 years of experience as a geriatric social worker. Her primary area of practice focuses on Dementia and decision-making capacity. She works with seniors living autonomously, in care facilities, in acute care at the hospital, and who are living with family. Stephanie also provides training and consultation to families, the Alzheimer’s Society, community groups, financial and legal institutions and at professional conferences. She hosts her own weekly podcast called Caregivers’ Circle on http://www.WebTalkRadio.net.